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Oliver’s Story

Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all.

- Emily Dickinson



On February 25th 2011, we took Oliver to the ER for what we thought were health issues related to constipation. After a bevy of tests, the doctors found a sacrococcygeal teratoma (which is a type of "germ cell tumor") growing from his tailbone into his abdominal cavity. The tumor was impacting his bladder, causing his belly distention and lots of discomfort. He was immediately transferred to the Pediatric Oncology unit at UNC's Children's Hospital. A few days later, Oliver underwent biopsy surgery to confirm the type of tumor and its stage of development, which the doctors determined was "stage 3". Oliver's tumor was malignant but had not metastasized.

Oliver underwent the standard protocol to treat his type of cancer, which was 4 rounds of chemotherapy (starting 3/4/2011). Each round took 5 days with a 2 week break in-between. After 4 rounds, the tumor shrunk in size by half. In early June '11, Oliver had major surgery where the surgeon removed all he (safely) could but the pathology report confirmed residual cancerous cells. So surgery was followed by 2 more rounds of chemo in the hopes that would kill what was leftover. However, after two months off treatment, Oliver's AFP level (tumor marker) started to rise again and scans confirmed regrowth.

After much despair and sadness, we regrouped and started on "Plan B." Oliver's oncologist selected a new chemo cocktail this time (Taxol, Carboplatin, Ifosfamide). Oliver completed two rounds and the tumor showed a really good response. Then on December 12th, Oliver underwent another major surgery. This time we went to Sloan-Kettering in New York, placing Oliver in the hands of some of the best solid tumor surgeons in the world. The team had to remove the bottom three joints of his sacrum as well as some rectum in order to get the tumor out "en bloc." The surgery, which lasted 12 hours, was a big success with clean margins all around. Next Oliver underwent two more rounds of chemotherapy in January '12 to kill any lingering cancer cells. Now we are in the watch-and-wait phase where Oliver gets regular scans & blood tests and we pray for NED (no evidence of disease.)

Oliver has a world-wide army of family & friends that surround him with love (in person & in spirit). He is an amazingly strong and resilient little boy, and we are committed to doing WHATEVER it takes to help him triumph over this horrible disease.

Latest Journal Update

Headed to Sleep with Happy News!

Oliver's doctor contacted us this evening to share the lab results which are ALL GREAT! Oliver's AFP is low (2.1), his Creatinine is stable (unchanged from last time) and his cell counts are normal! We are so happy, relieved and grateful to Dr. Davis for giving us this peace of mind before bedtime. (It can be a really tough wait…. hoping for the best but mentally preparing for the worst.)

The current plan is to go back in July and stay on a 6-month schedule with these post-treatment checks. Also, his doctor feels comfortable relying on the blood work and stopping MRIs (unless something changes.) That is a BIG DEAL! It'll save a lot of stress on Oliver (getting an IV + anesthesia) and also the radiation exposure. Oliver *may* get chest X-rays + abdominal ultrasounds as a middle ground, since this will give the docs a look "inside" but they aren't invasive and don't require sedation. We'll keep you in the loop if that's what we end up doing!

So it's back to normal(ISH) life for our family! We thank you all for continuing to follow Oliver's journey and sending love and good juju our way. Night all! xo

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Comments

14 Comments

Diana smith
By Diana — last edited
We love good news! Taking a big sigh of relief with you.
Lots of love your way!
madelyn levin
By Mads
So happy to hear the news. Blessings to all and cheers to Oliver the Great! Love, Mads
Barbara Smith
By barbara Smith
That is wonderful news! I'm so happy for you all. I always keep you in my thoughts and prayers.

Love--Aunt Barbara
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1 person hearted this
Franklin Floyd
By Franklin Floyd
Stacy,
Thanks for the update. Sounds fantastic! I DO SO know the feeling of relief. Even when it has been a while since treatment, you STILL worry, especially if you have been through a relapse. The 6 month schedule, no more MRIs and CTs sounds great too. Way to go Oliver!

Have you guys ever tried those movie goggles that they have in radiology? Franklin started doing MRIs with the goggles and no anesthesia/sedation when he was 4; it makes the whole process SO much easier. Franklin actually likes to get MRIs so he can watch a movie. I know, it might not work for everyone though.

Love and hugs,

Rebecca Floyd
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Kerrie & Dick Grant
By Kerrie & Dick Grant
Wonderful news! So happy for you all
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1 person hearted this
Amanda French
By Amanda French
So glad to hear it!!
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1 person hearted this
Kittie McKinney
By Kittie McKinney
Happy dance!!!!
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1 person hearted this
Pamela Nevare-Fisher
By Pamela & Mark Fisher
I NEED A 'THUMBS UP' ICON!...great news!!
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1 person hearted this
Peter Watson
By Peter Watson
Hooray! Great, great news.
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1 person hearted this
Christy Griffith
By Christy Griffith
Yay to less scanning! That's also a big deal for that tab you've got running at the hospital ;)
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1 person hearted this